A decision aid about feeding options in advanced dementia was effective to improve the quality of decision-making by surrogates for nursing home residents with dementia. Building on a previously piloted decision aid, this is the first randomized trial with evidence of sustained benefit over time. Surrogates face the emotionally and ethically difficult role of deciding on care for seriously ill patients, and use of the decision aid resulted less conflict and greater knowledge of treatment options. They were also more likely to discuss treatments with a health care provider, indicating the decision aid supported rather than replaced clinical communication. Intervention residents were more often provided dysphagia diets, and experienced less weight loss.
Decision aids reduce decisional conflict and facilitate informed decision-making for a wide range of healthcare choices, but have rarely been tested in serious illness. Nearly all randomized trials address outpatient decisions such as use of hormone replacement, stroke prophylaxis, cancer screening, and elective surgery. 36,37
A few studies have tested decision aids
for seriously ill patients and their families. Two trials found video decision aids on advance care planning increased geriatric or oncology outpatients’ interest in comfort care.26,38
In a 34-center randomized trial in France, an informational leaflet to augment communication with clinicians improved family comprehension of critical illness, although it did not target specific decisions.39
A decision aid about lung transplantation for adults with cystic fibrosis resulted in improved knowledge of risks and benefits and reduced decisional conflict at 3 weeks, with some evidence that choices remained durable up to a year.40
This study is the first trial of a decision aid conducted in the nursing home setting, and it provides evidence to improve the quality of surrogate decision-making despite the challenges to communication in this environment. One in four Americans, and 70% of people with dementia will spend their final days in a nursing home.41,42
Poor quality communication is a major practical barrier to improved care in advanced dementia.43
Families report limited contact with health professionals, and confusion about prognosis due to the prolonged trajectory of illness.44,45
Nursing home staff turnover rates are higher than in other healthcare settings.46,47
A majority of physicians do not provide nursing home care, and those who do are rarely on site.48
While the intervention increased frequency of communication, less than half of intervention surrogates discussed feeding options with a medical provider. Future decision aid
interventions may be more effective if delivered while concurrently engaging medical providers, informing nursing home staff, or testing policy changes to promote time for communication.
The low rate of explicit decisions about tube feeding in both groups was an unexpected finding. Nursing homes in this study had overall rates of tube feeding (0–7%) consistent with state (6.92%) and national (5.97%) averages.28
In both groups, medical providers may have been responding to diffusion of evidence and a secular trend toward less tube feeding in dementia.49
Although the decision aid was not shared with clinicians in intervention nursing homes, they may have learned about decision aid content when discussing feeding options with surrogates.50
Clinicians in control sites were aware that their patients were enrolled in a trial addressing feeding options in dementia. Awareness of the study topic may have had a broader Hawthorne effect, causing clinicians to re-consider orders for tube feeding.
Our findings should be interpreted in light of study limitations. Cluster randomization prevented double-blinding, and may have introduced bias due to site effects. This approach was necessary to avoid unintended dissemination of the decision aid to controls, and it mimics adoption of decision aids in practice. Outcome measures were highly specified to reduce bias, and partial blinding was maintained by withholding information on outcomes from treating clinicians. Risk of bias was minimized by matching nursing homes on characteristics associated with tube feeding practices, and adjusting analyses for differences in baseline characteristics and for intra-class correlation. The study design did not evaluate nursing home clinicians’ knowledge or approach to decision-making. Providers are clustered within nursing homes, and individual clinicians’ practices could have enhanced or diluted the effect of the decision aid. Research sites were within a single state, which may limit generalizability of findings. Finally, the decision aid had statistically significant but clinically modest effects. This study design permits precise measurement of the effect of the decision aid alone, but effectiveness may be greater if combined with clinician education.